Land of Nod

Nodding Syndrome

Nodding Syndrome is an epileptic epidemic that was first identified in the Mahenge Mountains of Tanzania (WHO, 2012). This discovery was made by a young Norwegian physician named Louise Jilek-Aall in 1960s. Dr Jilek-Aall was a physician specializing in neurology with a focus on epilepsy, and to this day she continues her efforts as a professor emeriti at the University of British Columbia in Vancouver. (Williams, 2012)

Dr Julek-Aall had noticed there was a concerning demographic arising within the patient population she was treating at the Mahenge Epilepsy Clinic. This sub-group all shared a unique trait. The symptomatology began with the child losing muscle tone of the neck leading to a distinct dropping forward or “nodding” of the head. Consciousness would be impaired at times, and these episodes of repetitive “nodding” would last anywhere from 2 minutes to 2 hours, then be followed by a drowsing post-ictal phase, normally seen after a patient has a seizure (Winkler, et al., 2008). This nodding was in fact discovered to be a form of seizure (WHO, 2012) and these children, when left untreated, would have on average 20+ episodes of nodding a month. (Winkler, et al., 2008)

This would be the beginning of the health decline these children would experience. Nodding Syndrome has a variety of affects on the continuum of health. It begins with a focal “nodding” seizure then progresses into a permanent cognitive decline leading to mental retardation (Winkler, et al., 2008) accompanied by drooling, malnutrition, stunted growth and wasting (WHO, 2012). What is more concerning is that head nodding for many can develop into more severe and potentially violent partial and generalized seizures. Anti-seizure medication is not always effective in controlling them (Winkler, et al., 2008) and these uncontrolled seizures commonly lead to injuries as the children fall to the ground or in campfires. (Donnelly, 2012)

The majority of the children affected by Nodding Syndrome (NS) are diagnosed between 5-15 years of age. (Reik, et al., 2012) The fatal course of this syndrome is a long one, taking years to end in the final result of permanent psychological and physical dependence on caregivers. The majority of the time, children do not die from the disease but the secondary symptoms. The majority of documented cases of death resulted from seizure-related accidents, drowning and burns. (Donnelly, 2012)

To date there is no known cause or cure. (Reik, et al., 2012) Scientists have found there exists a significant association of the syndrome involving Onchocerciasis, a parasitic disease caused by the filarial worm, also known as River Blindness. However, this association does not necessarily imply a causative relationship. (Williams, 2012)

Finally the greatest focus of concern is that the numbers of children seen affected by this syndrome is growing (WHO, 2012). Dr Julek-Aall discovered it in Tanzania in the 1960s, then it was found in South Sudan in the 1990s, then in Northern Uganda in 2003, and as of the summer of 2013 there are approximately 10,000 children afflicted between the three countries with over 3,000 of them residing in Northern Uganda (WHO, 2012).

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Presently Available ResearchWe will continue to update this list as new information comes in.

How we are going to Fight Nodding Syndrome.We have joined HFH in the fight against Nodding Syndrome. Our hope is to assist these children through a multifaceted approach including; community involvement, syndrome awareness, family support, medical treatment and research. Research specifically is of greatest concern for GNI. The fact that this disease is spreading, and seemingly without explanation, is why research efforts are so important, particularly for these vulnerable children. What is to be achieved is the development of a timeline to the symptomatology of the syndrome. This timeline will be compiled from data acquired from a retrospective review of the child’s medical records. We will use these records to build the beginning of a timeline to identify the typical progress of the disease, and to identify atypical cases that would aid researchers in postulating causes to progression variability. Documenting these variables will; aid in conceptualizing more effective interventions for these children, help researchers visualize the syndrome’s trajectory, and add to a growing foundation of knowledge about Nodding Syndrome. This will also lead to more definitive experimental studies that will continue to guide research efforts.Our efforts for community involvement are focused on starting young in the careers of nurses. The Community Nursing Scholarship was first established in Fort Portal, Uganda at the Fort Portal International School of Nursing. It was focused on empowering nursing students to volunteer and give back to the communities they reside in. This has multiple benefits but one of note is it creates more sensitive health care workers that are vested in the communities that have seen they have the power to help.

There are presently four nursing school residing in Nodding Syndrome affected communities per the Uganda Nurses and Midwives Council. What we hope to do is apply this already existing scholarship to aid the Nodding Syndrome community in the Gulu and Pader Districts of Uganda. This will promote educational projects for affected families and empower nursing students to take action. Presently funding is being explored for expansion of the scholarship. If you wish to donate towards this cause or the research please click the "To Donate" button above. If you wish to donate to the daily care and treatment of these children in the village of Odek, Uganda. Please visit our Partner;

Hope for HumaNS - exists to provide dignity, comfort, safety and hope to children afflicted with Nodding Syndrome and their families. They are creating a future where these innocent victims can receive the lifelong medical care and support they need to live a dignified life. They dedicated to the treatment and eradication of this devastating and fatal condition.